I have celiac disease. I’ve mentioned it before, here and there, but I’ve never wanted to take the time to talk about it because I considered it something that falls into the category of “personal,” and I don’t talk in detail about my personal life on this blog. I keep thinking about it of late, though, so in this case, I’ll make an exception.

Celiac disease is very common — it’s estimated 1 in 100 people have it — but celiac is also under-diagnosed or mis-diagnosed easily because of its wide array of potential symptoms (or even lack thereof). I came across this article the other day, which got me thinking about the nature of celiac disease and my particular experience with it. The basic part is that I’m living with celiac and it’s not an issue. Am I sad I can’t eat bread? No. Am I sad I can’t eat pasta? I actually love the texture of rice, potato, and corn pastas, especially this rice spaghetti with spinach I found. Delicious. Despite that, do I wish I didn’t have to deal with it? Yes, actually, I wish I didn’t have to deal with it. But I have it, so I deal with it. It’s as simple as that.

I was diagnosed in May 2009 the week after returning from my honeymoon. That was after almost six months of actively seeking an answer from my primary care physician and the gastroenterologist she sent me to see. My discussion with my primary care physician was an off-handed comment made to her in October, when I was in the office suffering from a sinus infection. “I’ve been having some discomfort,” I finally told her. My now-husband, then-fiancé had effectively badgered me into mentioning it to her after nine months of self-medicated lazy solutions that yielded no discernable results and changes in the way I felt.

“For how long?”

“Um. Well, I first noticed it once I moved to New York, after college. So, ah, late 2007, early 2008 maybe. But I assumed it had something to do with my change in diet and lifestyle — the college to grown-up transition. But even in college, I ate healthy foods, worked out regularly. So my routine isn’t that drastically different.”

She talked to me about it. My primary care physician is a lovely, brilliant woman who will listen to my hypochondriac blathering and diagnose me in a snap. She’s a teaching doctor and her office is filled with med students and interns who I’ve witnessed taking notes and asking teacher/student questions while I’m in the room. It’s hilarious. This also means that the questions my doctor asks are ones I never expect and they always seem to lead her directly to the exact answer. Teachers. She said, “You know? I bet it’s IBS. It usually is in a young woman. But I’ve got a friend and he’ll know for sure. I’ll refer you.”

So I went to see her gastroenterologist friend — another teaching doctor affiliated with the same medical school (at NYU). The gastroenterologist ran some tests, did the basic exam, and frowned. My symptoms were not nail-on-the-head anything. “It could be IBS. It probably is.” He frowned, running down the list of notes he’d sketched during my exam. “But maybe not. Let’s monitor this.” He gave me a few over-the-counter treatment options to use regularly for a few weeks. “If that doesn’t work, it will rule a few things out. Call me and make another appointment if that happens.” Naturally, I called and made an appointment four or five weeks later (again, prompted by my over-protective man; I was content to keep complaining and self-medicating). By now, it was February 2009. When my gastroenterologist said that he wanted to take a closer look and run some more complicated tests, I scheduled them for after the wedding, in mid-March. I was too busy to worry about how I was feeling with the wedding to plan.

At the post-wedding appointment in mid-March, I was examined like Katie Couric was, famously, on The Today Show a few years ago. I got to watch myself get examined on a TV screen and I felt kind of ridiculous. I’m too young for this, I kept thinking. But my teaching doctor gastroenterologist lectured me as he examined, and I got to learn far more about the colon than I’d ever known before. The biology geek in me who had once entertained the idea of med school sat there fascinated while the hysterical hypochondriac in me was silently hyperventilating. At the end of that, I was told my colon was filled with very healthy tissue and I most certainly did not have colon cancer. Oh, gee, I thought, colon cancer had been on the table? Really?

I couldn’t schedule a follow-up until May — the office is always booked — and honestly after that, I needed a few weeks’ respite from the gastroenterologist’s office. So it wasn’t colon cancer. It was, as my primary care physician had said months ago, probably just IBS. So I had them draw enough blood to supply an army of vampires for the full battery of tests and made the next appointment.

I didn’t get back in to see the results of the March test until May. My gastroenterologist sat down with me on the Tuesday after I’d returned from our all-you-can-eat Royal Caribbean honeymoon vacation. I was feeling horrible, but I only vaguely mentioned that. He pointed to numbers on my chart, ones that came back with my very complicated blood work he’d sent off the last time I was in the office. “Your numbers say you may have celiac disease,” he said.

I stared at him. Celiac disease, I thought. Like what Elizabeth Hasselbeck on The View has. (No really: that was my first association.) “Oh,” I said aloud. “Really.” My brain didn’t actually process this. My mouth just worked.

“Yes,” he said. My gastroenterologist is a brilliant, scholarly doctor — a teaching doctor. He always speaks in a combination of lecture-speak and an “I assume you already know X and Y, so I’ll begin with Z so we don’t waste time,” kind of manner. He said, “But we can’t know for certain unless we go in and have a look.” Oh, did I know about the going-in-and-having-a-look preference of my teaching doctor doctor. Not that I disagreed — I was an obsessive devotee of ER reruns on TNT for years, so I understood why — but I think in that moment my brain was grappling to find some levity. Not that I was panicking. I just wasn’t actually processing the data correctly. Agreeing with the good doctor was just easier. “I think it’s essential we find out for certain as soon as possible because if this is the cause, there is an easy way for you to start feeling better immediately. How’s tomorrow?” I booked the procedure for the next morning.

I called the requisite worried family members, who by now were all apprised of my quest for an answer, and they were as interested by my half diagnosis as I was. They wished me well and admitted they hoped I didn’t have it. I wasn’t so certain by that point. That night, I hit the internet. All I’d ever known about celiac disease before then had been approximately as much as I knew about, say, pneumonia or kidney stones. I knew what it was, theoretically what the causes and symptoms were, and what it meant for me only in the vaguest of terms. The internet — as you can go look if you Google “celiac disease” provided an inordinate amount of information. But I didn’t look at it too seriously. It was only a half-diagnosis, after all.

The next day, the husband came with — I needed to be sedated, so by law I needed to be escorted from the office; I felt very special. The moment I entered the examination room, the doctor began explaining by saying, “You’ll know it’s celiac the moment you wake up from the sedation because I’ll know the moment I’m in there. Have a seat.”

The thing about having a teaching doctor, I’ve realized, is if you remind them enough of one of their students, they tend to treat you like a student rather than a patient. That was how I’d felt all along — as if rather than reassuring me the patient, he was teaching me the student. It’s comforting for someone who’s spent more of her life as a student than not.

They sedated me. (Which, by the way, is so incredibly freaky. Falling asleep without the falling part, just the sleeping.) The next time I blinked, I looked around the room to see everyone cleaning up. “You have celiac,” the doctor announced. He seemed pleased, as if he’d found the missing piece of that 1,000 piece jigsaw puzzle tucked under the sofa. “I’m so happy because it’s so treatable. You’ll start seeing a change immediately.”

He sat with the husband and I and explained in the most basic terms what celiac was — which I already knew — and what that had meant for my small intestine. He even showed me images he’d printed of my small intestine and the deteriorative damage it had suffered due to my ingesting gluten. (Those images worked like the images of the cancerous lungs they show to kids to keep them from smoking. Holy goats, I didn’t want anything to do with gluten after that.) My specific (and unusual) set of symptoms was what led to the confusion regarding my lengthy diagnosis process. He said roughly 2% of people with celiac exhibit the symptoms I had, which was why it took them so long to rule out other things and pin this one down. The husband, my man whose favorite foods involve pretzels, brioche rolls, Italian hoagies, and fascinating pizzas, was a little horrified. No more wheat, rye, or barley? But that meant no more beer! I smiled in his direction. The marriage was two months old and this was the first big test. How would he handle it? (Remarkably generously, as it turned out.)

I, meanwhile, sat there in the gastroenterologist’s office, blinking as my brain processed this. “I’ve always preferred a salad to a sandwich,” I said. “I like fruit. I hate cupcakes.”

I found I used that explanation a lot over the next days and weeks. People came up to me and gave me their condolences about my “disease” and how they were so sad I wouldn’t be able to eat bread ever again. The older the person, the stranger and more sympathetically depressing the reaction. It was as if I’d told them I’d been diagnosed with one of those life-threatening illnesses with a 98% survival rate. They approached me with a sympathetic apology and overwhelming good cheer half the time. Even my lady doctor startled when I told him. “Oh, really? I’m so sorry. That’s so unfortunate.” I had to resist the urge to snap, “No one has died! Stop grieving over the loss of my intestine’s ability to endure the presence of the gluten protein!” Instead, I said lightly, “I’ve always liked salads.”

The biggest thing for me over the past nine months hasn’t been coping with the loss of foods I can’t eat. When I said I wasn’t a big sandwich person, I meant it. I love sushi and Thai (hold the soy sauce unless it’s gluten-free, though) and I really do love salads. What gets to me is the prevalence of wheat-based foods. The nutritionist I consulted summed it up perfectly: America is a wheat-based society. Whereas China, India, and Japan (and other nations) are largely rice-based societies, Americans go to wheat (and to a lesser extent, corn, which I can eat) for everything. That means wheat products and flour made from wheat are cheap. Thus, wheat flour is often the go-to flour in pretty much every sense in this country. (Wikipedia says, “In the culinary sense, flour is a powder made of cereal grains, other seeds, or roots.” Flour is often synonymous in our culture with “wheat flour,” wherein lies most people’s confusion.) Flour doesn’t only have to come from wheat, though. You can find flours made from rice, corn, bean, quinoa, arrowroot, tapioca and a ton of variations of other starches. But if a recipe of something as innocuous as gravy calls for flour, the chef is going to add wheat flour. It’s just how things go. (There’s also the gluten protein itself, which has some fascinating culinary science applications — i.e. it’s the gluten that gives New York pizza crust its doughy, throw-able springy texture — but that’s another story for a culinary-science-inspired entry.)

In some senses, it’s also hard because I grew up being able to eat gluten, so I am conscious of what I’m missing. If I have a craving for a Pepperidge Farm Milano cookie (which is, cough, distinctive), or an Oreo, I can’t eat it. I’m a texture person, rather than a taste person, so it’s the smooth softness of a classic Madeleine cookie I miss, the chewy crustiness of good New York pizza crust, the bready, soft New York bagel. (Okay, living in New York, home of the best bread in America, doesn’t help, although to its credit, New York is also an amazingly celiac-friendly city.) But it’s not debilitating. I feel bad when I can’t eat food someone has made for a potluck. I hate having to explain the fact that I can’t eat certain things to confused waiters in loud restaurants when I ask if a certain dish has any hidden flour in it (and yes, I take a risk when going to restaurants, but I’m not so affected I can’t trust the kitchens of my neighborhood haunts). Most restaurants in New York I’ve encountered are surprisingly accommodating, friendly, and the waiters are actually knowledgeable. I’ve been told tableside whether or not certain sauces contain flour by waiters who tell me they get the question more often than I’d probably expect. It makes it easier to deal with when I don’t feel so alone, when I have friends who are willing to accommodate me and others who shrug and say, “I’m not a big pasta person anyway.”

Having celiac isn’t like having a peanut allergy, it’s not like being allergic to bell peppers. I’ve explained it to very small children by calling it an allergy — that’s a keyword they know from the cradle, apparently — though when asked to elaborate I do admit it’s “like” an allergy, but it’s not really one. At restaurants I used to say I couldn’t eat bread, which led waiters to look at me as if I was some Atkins Diet fanatic. I quickly turned that into “I’m allergic to wheat,” which is now basically, “I can’t eat wheat, rye, or barley.” (That seems to be easiest at restaurants, rather than having to explain the definition of celiac to a stranger.) For practical purposes, it’s more like being vegetarian or vegan, though with an identifiable medical effect if I “cheat.” And like vegetarianism or veganism, it is,  in my experience, generally recognized. Out of the hundreds of people I’ve had to explain my condition to, only one has actually frowned and said, “I’ve never heard of that.” The overwhelming response of late is, “Really? I know someone with celiac.” When I hear that, I smile.

One in a hundred, I keep thinking. It’s not so bad, as “conditions” go. It’s forced the husband and I to cook more, get more creative, become newly addicted to Food Network. I’ve perfected a fantastic gluten-free scone recipe. (Cranberry walnut is the current favorite variety.) Maybe one day I’ll perfect a gluten-free imitation Milano or Oreo recipe. Sigh. I’ll keep working on it.